Post a Note to Bob
Please post a note to Bob with your thoughts, comments, and well wishes for Bob by leaving a comment at the bottom of the page. You can also leave comments on any other page in the site.
Bob’s Blog
Bob has started a new blog to share his views on topics other than his health: What's the Big Idea?
Recent Comments
- Margaret Bullitt-Jonas on Steady Improvement in the New Year
- Eric Howard on Steady Improvement in the New Year
- Stuart on Steady Improvement in the New Year
- Judith White on Post a Note to Bob
- Debora Gilbert Ryan on Steady Improvement in the New Year
I knew Rev. Massie as a young girl/teenager in Twilight Park. My participation in the youth service as one of two people who gave the sermon (along with David Swanson, son of Barbie & Ken Swanson) is a wonderful memory that I cherish. The subject of our joint sermon was “hope”… this is something that I, and all of the Twilight community, will continue to do as we follow your progress in finding a living donor. In the meantime, you are in our thoughts and prayers. Please tell Rev. Massie that I send my very best and will be thinking of him.
Love, Amanda (Gordon) Fletcher
I sent an announcement about this website to everyone on my email list today. Even allowing for duplicates, that got the message out to hundreds of people, and I pray the news will spread like ripples in a pond. I will also add Bob to the healing ministry prayer list at All Saints, and encourage others with similar ministries to add him to their prayer lists as well. “My word goes out from my mouth… it will not return to me empty, but will accomplish what I desire, and achieve the purpose for which I sent it.” In advocating for Bob we are all acting as the mouth of God.
Thank you, Leslie, for the eloquent email that you sent to everyone in your address book. I borrowed from your letter (with attribution!) and have sent out my own request to another wide circle of contacts. I imagine a ribbon of light going out into the darkness, illuminating a web of connections among acquaintances, strangers, and friends that we’ve never felt before. As a community gathers in all its diversity around Bob and holds him in love and prayer, I trust that blessings are coming to him and to everyone involved.
–Margaret Bullitt-Jonas
The following song was written by Dave Alvin and recorded by my band, Joe Uehlein & The U-Liners. It is a beautiful song of hope. I recorded it with Bob Massie in mind, for no matter how dry the river of life might seem at times, someday it’s gonna rain, and someday it’s gonna pour……as it will for Bob. Anyone who knows Bob, knows what I mean.
To listen to the song, click one of the options below:
Dry River (MP3 – 4MB download)
Bob wrote the following words to me six days after the Sept. 11 attacks on the World Trade Towers. I was bemoaning to Bob how the great Seattle anti-WTO demonstrations on Nov. 30, 1999, which I organized on behalf of the labor movement, represented a high water mark for progressives and for humanity. N3099, as it came to called, was an awesome coming together of humanity in protest against corporate power. The following year the progressive movement was undermined by Ralph Nader’s candidacy, and then the stolen election by George Bush, and then Sept. 11. I really felt that all I had worked for my entire life was slipping away — that it could take progressives a decade or more to overcome the recent chain of events. Bob shared these words…of hope and inspiration:
"We are in a long struggle;
Longer than you or me or
Anything we know.
It stretches
from far behind to far ahead.
It doesn’t hang on any one thing or person,
But comes from the deepest longing
Of the whole universe for justice
And for peace.
We must defy the darkness…
No matter what.
No matter what."
Bob Massie
September 17, 2001
It is wonderful to know how generously people have responded to the possibility of being a liver donor for Bob — these special people, whoever they are, deserve enormous thanks.
Thank you! You know who you are!
And ongoing prayers of hope for Bob as we move through winter and look forward to spring.
With love,
Margaret
Margaret – you are our most loyal message poster — thank you. And a number of people responded specifically to your tremendous letter. Anne & Bob
This is to Bob and Anne. I was happily at your wedding and want you to know that both of you are in my heart and prayers. My blood type, unfortunately, is B+, not O. I will send your website to several of my friends in the hope that someone is a perfect match. Bob has touched my life in many ways, but the most profound is the August 22, 1992 sermon he preached at All Angels Church at Twilight Part when – for the first time – I felt the Holy Spirit within me. This changed my life forever. Love to the Massie/Tate family from the Rogers/Manix family.
“Bob has touched my life in many ways, but the most profound is the August 22, 1992 sermon he preached at All Angels Church at Twilight Part when – for the first time – I felt the Holy Spirit within me.”
Wow, could there be a more powerful testiment! Bob’s light will continue to shine, like a beacon through the fog, bringing clarity to many. Believe that.
Bob and Anne: It was my blessing to meet both of you at the Kerry Thank You Event in Boston. Your resume and living example speak volumes to your heroism, courage and strength in the face of all obstacles, in your dedication to fight as a team for humanity and your health. This world has truly benefitted from your hard work, prayers and your love for society-at-large. You are a beacon light in Boston that illuminates through all of us. A light that makes us feel so warm, loved and empowered. We are all privileged to have been touched by your living example. Your light shines bright in me. But more importantly to me, your beam has provided endless wattage for my daughter. We love you and thank God for using you and Anne as vehicles to pull us along through our mountaintop experiences, and to give him the praise for our blessings. You are the man and the woman!!! Keep smiling and I look forward to that home cooked meal that you and Anne promised. Bob, you and Anne truly spell LOVE!!! Sandy Pressley (mother of Ayanna Pressley)
As a child, I read *Journey* — not once but many times. I felt like I knew young Bob Massie. And I can still explain how hemophilia is passed from mother to son (and how two brown-eyed parents can produce blue-eyed kids), from reading that book!
I happened to note Bob’s deteriorating health in a recent issue of Princeton Alumni Weekly (I’m class of 1990). Lots of people whom you’ve never met, including my family, have followed your career over the years, and are rooting for you now! Good luck!!
This Katie Massie. I am almost ten years old and believe or not, this one of the first times I have really looked at my dad’s website. My half-brothers have probaply looked at it more closely than I have. I was reading some of the comments and it is amazing to see how many people have looked in. It is really nice to see all the support that my family is being given.
Thanks!
Kate Massie
If anyone knows how I might find a copy of “Journey” please let me know.
Joe Uehlein
I know it is now 3 years later but… I just got a copy of “Journey” at Amazon.com
My best wishes go out to Bob and Anne. Two incredible, wonderful and amazing people.
My favorite book of all time…Your mom and dad were awesome, and of course you too. I have probably read Journey at least 100 times and each time it gets better. The first copy I had has been read so much it was in tatters. I found one in a used book shop in Indiana, my proudest find. I will pray for your good health and for your family.
It’s true — Journey is an incredible book!
My family has shared several Easter feasts — complete with Easter egg hunts — with Bob and Anne and their family, so my thoughts and prayers are with you in a special way this year as we prepare to celebrate the Resurrection. My family and I have now moved out to western Mass., but our hearts will be with you on Easter Sunday. Love to all of you as we celebrate our Risen Lord.
Dear Bob and Ann,
I am currently graduating from the pharmacy technician program at clark college in Vancouver, WA. Our class recently watch a video filmed by Nova featuring your amazing story. I was deeply inspired by what i saw. Your dedication and determination has brought you a long way, and besides that 3 beautiful children. I wish you both the best, and bob i will pray that you will recover soon.
Hi Dr. Massie
I ran across one of your dad’s books on Amazon the other day, and had been wondering how you were and what you were doing, so I googled you and found this page. I’m very sorry that you are so ill. Your class at HDS on lobbying corporations is one of the most memorable I took while at Harvard, and I owe you a great debt.
I hope the liver transplant comes through soon. I went and had my blood tested (O+), so the hospital has my name. Though it sounds like there are lots of people in line there in Boston, some of whom are pretty far along in the process. (And I lived in England in the 80s, which makes me of dubious cleanliness due to mad cow disease exposure. Ugh!)
Let me know if there is anything I can do. I’m sending lots of good thoughts your way, and for your family!
Amy Langston (HDS M.Div. ‘97 – Portland, Oregon)
I hope the liver transplant comes through soon. I went and had my blood tested (O+), so the hospital has my name. Though it sounds like there are lots of people in line there in Boston, some of whom are pretty far along in the process.- Thank you
Dear Bob and Anne:
Just wanted you to know that I’ve been thinking of you since receiving the December letter from Bob’s sister Liz, and am delighted there is a website to find out what is going on, medically and otherwise, with you all.
Dear Bob and Anne,
I am at the shore, in Rhode Island and was musing on this beautiful month of August when I rembered that the 17th is Bob’s birthday. Please accept an early “happy birthday” wish from a friend who sends love to you both.
It is liberating and quite wonderful to be out of Washington, where the daily diet of bad news really gets you down. On the other hand, to read about what you and Tim have been doing at the UN since 2003 gives me hope.
I don’t know If I told you, when we last spoke, that the day after the election, I flew to Brazil for a week’s meditation retreat in the rainforest – Serra do Mar – on an old plantation (now organic farm) , 125 miles north of Rio. It was heaven – the best possible medecine.
I hope Tony has filled you in on TNS, including Karl Henrik’s award. We are all still loosely connected, although I went off the board last year.
Take very good care.
Love,
Dane
Some years ago I read Journey, wrote a letter of thanks to your parents, and later that year received a Christmas card and thoughtful note of response. Since that time I have continued my interest in the Romanovs and am currently working on a novel about the eldest Romanov daughter. I also have read, with tremendous interest,
Dear Bob -
I first read your father’s beautiful book on “Nicholas & Alexandra” almost 30 years ago, and fell in love with all things Romanov.
Your “journey” has touched all my life. My grandmother lovingly read “Nicholas and Alexandra” to me when I was four years old (1970). I understood thoroughly every word she read.
Hi, I read about you in your parent’s book way back in high school.
Hello Bob,
In the mid-eighties when I was a young mother working at an electronics firm in southern California, I discovered the book Journey on a book exchange table in the lunchroom.
Dear Bob,
I am a high school science teacher, and today (6/12/07) I watched the 1999 NOVA program “Surviving AIDS”
I first read “Journey” when I was 12. I literally read the book to rags in the next ten years, over & over, and oft wondered what had become of Bobbie Massie. In finding your website I take courage from your strength to continue my own (albeit MUCH less difficult) battle with Crohn’s Disease. If you can face each day with such grace, I have no excuse for whining. My best wishes are with you in the hopes for a donor soon.
Hi Margaret – We are just revising this page and we saw your comment from many months ago. We are sorry to hear about your Crohn’s Disease, which we know is challenging, and by the way, we are not in a competition! Everyone deal with the problems they have as best they can. Thanks for your supportive words. We hope you do well this coming year. Bob & Anne
This Katie Massie. I am almost ten years old and believe or not, this one of the first times I have really looked at my dad’s website. My half-brothers have probaply looked at it more closely than I have. I was reading some of the comments and it is amazing to see how many people have looked in. It is really nice to see all the support that my family is being given.
Thanks!
Kate Massie
I know it is now 3 years later but… I just got a copy of “Journey”
at Amazon.com
I read Journey in the late 70s and it was inspirational on so many levels. I pick up copies whenever I find them, so I can give them away.
I hold you and your family in the heart of my heart, and wish for you all peace and joy.
Namaste,
Zann Carter
http://www.zanncarter.com
http://www.lizardsintheleaves.blogspot.com
“I want freedom, the right to self-expression, everybody’s right to beautiful, radiant things.”–Emma Goldman
Hello to Bob and family,
My sister picked up your book for me just last year at the used book sale in her hometown because of Suzanne Massie’s name. She had no idea what it was about, hadn’t even perused a page or two, but I was totally engrossed and had a hard time putting it down. I passed the book along to another sister and she emailed me with a link to your website. It’s amazing to see what you’ve done with your life and I’m sorry for your health problems now and hope that this turns out well for you. Thank you for posting this to let us all know how you are doing and best wishes for a peaceful holiday season.
Susan Massey
Dear Susan: Thank you for these warm wishes. Anne and I are doing our best to hang in there – it has been six years of waiting, and I am definitely feeling the fatigue of advanced liver disease. I will pass on your good wishes to my mother, Suzanne Massie, who I will see tomorrow! Bob
Thank you for posting a note! It’s really cool to see that people are still picking up Journey and enjoying it. We all are really happy to know that you liked the book and we thank you for your kind wishes!
Kate Massie
Thank you everyone for posting on Dad’s website. It’s nice to know that everyone’s thinking of us. We are very grateful for your kind wishes.
Katie Massie
Hi Mom and Dad! How ya doing
Katie
(the one and only daughter of Bob Massie)
Kate – Thanks for taking up the task of blog master. You certainly surprised me! Dad
Never give up.
15 years ago I was diagnosed with leukemia with a 5% chance of surviving one year.
After 6 rounds of high-dose combination chemo, nine months later I relapsed and was diagnosed with HCV. I was disqualified for a donor bone marrow transplant, failed a stem cell transplant, and experimental immune system treatment.
The chemo caused extensive fibrosis of the liver and lungs, etc.
I am telling you all this because I refused to give up and for some reason, no one knows, I am still here.
My good friend had a massive heart attack in her late 30’s. She was not supposed to make it. But she got the call – a young motorcycle rider lost his life in a wreck but he was kept alive long enough for her to get 300 miles to a transplant center. That was 10 years ago.
I’d give you part of my liver but you probably wouldn’t want it. My blood type is AB-. I also am CMV positive.
If you are alive, you are a survivor.
Addition: I was transfusion dependent for 3 years!
My marrow was so trashed, I was completely dependent on blood and platelet transfusion for three years.
Two or three times a week I had to go get transfusions through the same central line that I got my chemo.
Platelets do not last long. A cut kept bleeding out.
My brain is still foggy. It’s hard to believe that I drove myself around, took care of all the insurance bills, and took care of my medical issues by myself, as screwed up as my brain was.
My favorite insurance company story is the bill I got for more than $10,000 from one hospital. Those bills are like sanskit. I finally got an answer from a billing representative after lots of calls. Apparently the insurance company had approved the a couple of months of transfusions, but not the use of the chair in the transfusion room.
It’s funny now.
Take care. Be in good spirits.
My motto was always “Whatever”.
Wow – what a story. You have been through an amazing amount. Thank you for the encouragement.
I have met some transplant patients like your friend who are doing very well. Of course, it seems like a dream that it might actually happen to me some day, but meeting other people and hearing what they have been through helps me keep the faith.
Hey dad, I am writing about you in the paper. I hope that is okay.
Love ya!
Katie
Hello, Bob. Hope this finds you feeling well. I came across your web page the other day while trying to purchase a copy of Journey. Then the NHF actually provided this link when I asked them for assistance in finding a copy for my son to read.
As a very young, single mother of a newly diagnosed son with Severe Factor VIII Deficiency, I read the book in 1981. At first it scared me, but later your parents and, especially, you became an inspiration to me. I’ve held you up as an example to my son all of his life. Luckily, he never got HIV and cleared his Hepatitis C and is doing well. I know his hemophilia was much easier to manage than yours, but he has suffered and has been very brave. He has finally taken an interest in reading about his condition, and I hope he will be able to read Journey. No other book on hemophilia has ever made such an impact on me. It also sparked an interest in the Romanovs and I have all of your father’s books on that subject. (They have been easier to find.)
Bob, I just want to wish you well. I hope you get your liver soon and wish I could help.
Hi, I am in newspaper club. I am showing everyone the pictures, except, there are no great pics of you, Dad! You should change that!
Luv ya!
Katie
…give me a ring sometime when you are up for it to talk about life, faith and big ideas (no small talk).
Dear Bob,
I came across your blog and had to respond. I don’t know what your current situation is but wanted to share a little. I am 4 months post transplant and am back at home in RI. I was listed at New England Medical Center and then MGH for a total of 9 years while I watched my meld score climb and my condition deteriorate. At some point I became aware that there were better options, and went to the Mayo Clinic in Jacksonville FL to be evaluated. They listed me, and although I had to temporarily relocate there, I recieved aliver Jan 2, 2009. I waited almost a year there due to blood type and other requirements. During my wait I had three ‘dry runs’. The Mayo does not call backups. If you are still waiting, keep the faith, and if you want to hear more about my experience with Mayo let me know and I will call.
Richard Friend
Dear Anne and Bob,
What joyful news you posted in your blog…Bob’s recovery sounds almost miraculous. It is heart-warming to know that this long story may yet have a very happy transition to a new life chapter.
You are and will continue to be in my thoughts.
Warmly,
Adria Goodson
Hi Bob -
What wonderful news – I’m so happy for you – and it’s just amazing how feelings move through cyberspace….so moved and glad and wishing you a wonderful recovery. Laura Dubester (CET)
Bob and Anne,
I am beaming in Boston with the news of this fantastic surgery and the first steps of the recovery. Congratulations. Jack and I are cheering you on. Big hug to (my double) classmate Dr. Knechtle. And that Susannah sounds absolutely amazing.
xoxo
…its really beautiful when things work out down here on earth. looking forward to hearing about all your big ideas once your about.
jim
I am so happy for you and glad to read about your evident enjoyment of your new found health.
Love, Debora
Congratulations you two!! Heinrich and I are thinking of you and are so grateful that it is going well.
love you!
Lili and Heinrich
What amazing news that the waiting is behind you….and you are doing so well on the other side! My thoughts and wishes for speedy recovery will be with you each day.
Bob we are so happy you are progressing so well. We have been reading Anne’s posts and were delighted with yesterday’s post.
We also loved reading Katy’s remarks…Aren’t you lucky to be her Dad?
Anne-you are remarkable.
Bob and Anne-
Shear joy. You have been such an inspiration to so many for so long. We cannot wait to see you back in Boston and we are thrilled. Thank you for the updates–as somebody said, each one inspires beaming–silly smiles of joy-
Charlie and Blyth and Taylor and Eliza
We are so happy to hear the glad news.
Bob and Anne,
We heard, of course, about the wonderful news and are so delighted. We know it’s been a long, hard struggle waiting for a transplant.
Great cheers from New Jersey!
Diane & Jefferson
Bob & Anne – thanks for calling in to the Ceres board retreat to say hello! It was great to hear your wonderful voices and folks in the room were all smiles. take good care,
Jess
Every morning we check Ann’s message and are so happy that Bob has been doing so well. It is about time he got a break! He has gone through so much & given back so much, he richly deserves to have his health restored and improved. We send you both our love. Later, we will try to call. Kim & Lorna
GOD IS GOOD…
… ALL THE TIME!!!
I am so thrilled by this news! Seven years of praying and holding on to hope and waiting on the Lord have produced this wonderful outcome:
they that wait upon the Lord shall renew their strength
they shall mount up with wings like eagles
they shall run and not grow weary
they shall walk and not faint
I am so full of joyful emotions that I have run out of words! Blessings to everyone who helped make this new beginning possible!!!
Just a note from your neighbor down the street! You are all in my thoughts and prayers, without cease. I’m so happy to hear of the fabulious news and your continued progress! Health to you and your new addition!!
Hi Bob and Anne,
You’ve been in my thoughts here in Sitka, AK! I’m so glad to hear that you are out of the hospital and recovery is trending up. I’ll keep you in my thoughts here and please keep posting progress reports. I’d cook you up a fresh white king salmon fillet if you were here!
Ben
Hi Bob & Anne,
I just read an essay of yours (The constant shadow: Reflections on the life of a chronically ill child) for my DMin major project. I was touched by your observations. A bit of Googling led me here. I will keep you in my prayers over the coming weeks and months.
Blessings
Dwight Warden
Pastor, Blackduck Evangelical Free Church
Blackduck, MN
Not sure if I ever told you this or not. But The Yearling, which you gave me years ago, is one of my all-time favorite books. (As I believe it was for you?)
Also — am very pleased by your progress — and I speak for all of the Swezeys when I say that you are never far from our thoughts and prayers. Nicholas and his wife have two young children and I hope to be as good to them as you were to all of us!
-Christian
dear bob and anne, I was so happy to hear the wonderful news and just caught up on reading the amazing journey of your past few weeks on the blog. bob is the one who got the actual organ but anne and your three wonderful children got the gift of this miracle just as surely as he did.
praying for more strength and recovery for you each day.
love
ruth
Bob, we are overjoyed to hear of your news. Kassie has tried to call and has written to let you know of her excitement—what an adventure! How long will you be in Georgia? Is there a possiblity that we could run down to see you while you are still in the area? We know that energy is an issue, and wouldn’t want to put you at any risk or stress, but it would be so good to see you! Where is Samuel now? Massie has finished at Chapel Hill with a degree in cultural anthropology and international studies and is busily looking for a job. Tucker is a rising junior at UNC and is majoring in peace, war and defense ( we are hoping it is mostly peace). I”m teaching at an Episcopal school here in Charlotte, and Hardin is keeping the world of mime alive. I just finished reading Cutting for Stone, which involves a liver tranplant. We want to meet the amazing Anne, who seems to be a powerhouse that can keep things together and swim at the same time! A picture of you is in our living room, a part of a collage of our wedding, and we think of you often. You are in our thoughts and prayers, Bob. We treasure you.
Linda
Hi Bob & Anne,
Bob, so pleased to read some of your news and to know things are moving along. What an inspiring story.
I look forward to seeing you both upon your return to Massachusetts.
Best wishes,
Dr. Angel
I haven’t seen you since graduating Hackley but something must have tickled my brain because I thought of you (“I wonder whatever happened to..”) out of nowhere. And here I find that you’ve been doing good works and have had health issues that thankfully have been addressed. I’m glad that things have turned out well and send my warmest wishes to you!
Bob, I just received your letter in the mail. I had no idea of the amazing developments in your life (and Anne’s and Kate’s) since July 10. I can’t tell you how happy I was – not to mention moved – to read your life-changing news and all your expressions of joy and gratitude. I then went to the website and updated myself on the all the postings since July 9. What a story!
For my part, I am ever grateful that I had the good fortune to meet you and to be inspired by your spirit, your warmth, your wisdom and your patience – the GRI journey with you has been a very special phase of my life in so many ways, for which I deeply thank you. I can’t wait now until the next time we meet, wherever that may be (perhaps in Amsterdam next May, if not sooner). Meanwhile I hardly dare imagine what you will be achieving next with your new lease on life – whatever you are doing, it will be big, bold and beneficial to the world, and will touch many lives with challenge, energy and fun ! I’m so thankful and happy for what has recently happened in your life. Warmest good wishes as always to you and family. Alan
Hi Bob,
I’ve been meaning to write, but with parents visiting and the other crazy stuff that goes on in life, I haven’t managed to. Fred and I are so pleased that the transplant has gone well and soon you will be back in action. I just recently learned that a living person could donate part of a liver – what a concept! (And all this time I thought you needed to wait for someone who willed their organs to die). From your blog, it sounds like you didn’t even know this woman. It is very heartwarming to know there are people out there, like yourself, who do so much for other people.
We know it will be months before you can really pick up where you left off with your various projects, but months will seem like a short time after these years of waiting. We are looking forward to seeing your smiling face back in Somerville. Take it easy and know we are thinking of you.
Lori Segall
Just wanted to drop you a note to say Hi, and keep up the healing. I didn’t know your mom wasn’t well, so I just emailed her too, saying she needs to get better so we can have borscht. (I hope she likes the stuff….)
All the best,
Andre
hi bob, glad to hear that things are coming along and that you are keeping your sharp wit, good humor, and deep faith through it all. I am sorry to hear about your mother’s arm; its now 3 years ago that I fell and broke both my arms, and having been blessed with such good health all my life, it was a valuable experience in being less-than-fully-abled. I will always have a special affinity to those wearing plaster casts.
I hope that you all will be home in Somerville soon!
Ruth
What fabulous news that you are on your way home!!! Yipee! We are just back from the cove. It was an amazing week. We saw Janine very briefly (always a treat) and met Ben but missed, of course, your whole family. There were water balloon fights, semores on the beach, and a Red House Risk game that took place in real time as people’s “lobster” battled for control of Gimblesland, Porchland, etc. Lots of fun but less fun for not having you there. Obviously, we will have to stage a repeat. In the meantime, we can’t wait to have you back within hailing distance. Next weekend we head to Cambrige to move Asher into Mather House! Yipee again! Then, as the fall rolls foreward there will be travel back and forth. When you guys are ready, we’re at the ready to stop by. XXX, Holly
We were sorry to hear that you have been back for tests Jean is still
having adjustments with the Prograf. She is very tired when it is too
low.
Kathie
a full and speedy recovery
Alex
Bob and Anne:
We have been following the Liver Saga via Katharine — which has been wonderful and helpful — however, this is certainly more detailed and even a bit more “personal” (which seems odd to me — of the “older generation”). Anyway, just wanted you to know that you have been, and are, in our thoughts and prayers.
We had a good summer. It was fun to see Kate again and always amazing to watch this generation grow and develop their individual personalities. Sam continues to avoid “The Transplant List”, but that whole experience hovers for us too. In the meantime we are enjoying the SUN after so much Irish weather!
All the best!
The Carletons
Hello to Bob and family;
As a mother of a 25 year old son with hemophilia, I know you, although we’ve never met except on the “Journey”. That was the first info source I could get my hands on, when I found out that my 7-month old son had the disorder. He also has hep C. The bleeding disorder has no history in our family. I so want to share the unique story of my journey with you. The Romanov family, especially Alexei, was my obsession in 8th grade. While expanding on my knowledge of world history, of course I read “Nicholas and Alexandra”. When I was in my 20’s and married, I named my firstborn Alexis. Her brother was born nearly 4 years later. Just before he was diagnosed, I was accused of physical abuse, due to his awful bruising. But the fight was just beginning–mine and his—with AIDS bursting on the scene in 1983 when he was born. Immediately my world became cryoprecipitate, donor-designated pharesis, and sheer terror. Just this summer, he was fighting for his life–again–after a routine prophylaxis with clotting factor went horribly wrong, and he contracted blood sepsis. He spent all of July in Jefferson hospital in Philadelphia. At this moment he is okay. As for me, I am an alum of Boston College grad school of theology. In the early ’90’s, I sang in the church where your parents were married! Long story. The professional choral society of which I am a charter member has performed at Carnegie Hall twice, Avery Fisher Hall at Lincoln Center, and at the consistory of cardinals (Justin Rigali of Phila)at St. Peter’s in Rome. I have a few associations with Princeton. I live in southern Jersey. I am a writer, pastoral musician, (piano, organ, Celtic harp), liturgist. In the ’70’s I worked in communications–4 years in newspaper, lifetime in radio and cable television. Aside from my work, and vocational call to ministry, my family has been primary. My husband of thirty years was mayor of our city for an unprecedented 3 terms under a commission form of municiple government. We’ve met presidents and had a wonderful life. I was also blessed to “surrogate” the adoption of a little boy from Romania who was found to have hemophilia after being released from his country to a midwestern adoptive couple. They were preparing to leave the country, and felt they would leave Andrew there–knowing nothing about the disorder, except that he had bled all night from a medical malpractice procedure, prior to their morning departure. I got a panicked telephone call from Bucharest–again, a long, long story. When you feel like hearing about that journey, I will share it, and pictures, too. BTW, Andrew lives in the Chicago metro area, and is very gifted and 14 years old. He has been on prophylactic recombinent factor all his life; no bleeds, no joint problems, and I am confident God has great plans for this young man, baptized Abel in his native country. As for you, Bob, be assured of my continual prayers for your recovery. Also, if she is up to it, please share my email with your mother. I do pray that her arm is healing and that she is well. Blessings to your family, Kimberly
What an amazing story – thank you for being in touch and for describing it. I will definitely pass it along to my mother. Bob
I was more interested in finding you, and inquiring about your health, than going on about myself. However, during the dark hours of long nights, I’ve been thinking that there are more connections. Perhaps you might have some good words to share along the medical front–especially since a MASSGEN physician is on my list of heroes. I was diagnosed four years ago with multiple sclerosis. However, nothing about it looks like that. So, this past March, as I sat in the waiting room to see my neurologist, I happened to pick up the magazine “Neurology Now”. I almost fell over reading it. My symptoms are described perfectly, and it is NOT MS. Going back to the topic of “connections”, Dr. Ann Oaklander at MASSGEN has identified ‘Olney lesions’ and the condition associated with it; CRPS (Chronic Repetitive Pain Syndrome). Formerly called ‘mystery pain’, Dr. Oaklander is the first to prove specific measures to analyze changes in neurologic cells, thereby the condition is now proven to be legitimate. Previously, people with ‘mystery pain’ were labeled psychotic, and worse. While it is helpful to know that my initial diagnosis is wrong, the secondary diagnosis is awful. My specific case is “brachial plexus injury via trauma”. It is about as bad as it gets. Symptomatically, people may have a limb with such severe pain, they may resort to plunging the limb in a bucket of ice to numb it. My pain starts in the back of my head, down my neck, under the shoulder blade, and down my right arm to the fingers. Remember–I’m a musician! My Steinway is pretty dusty. As I write, I am waiting for copies of my medical records from two prestigious Philadelphia hospitals, so that I can forward them to Mayo Clinic. I do not know if I will be accepted there. Current treatment is with ketamine infusions–a drug well tolerated as an anesthetic. However, in Europe people are put into a coma and treated with high dosage, over time. In the US there are now clinical trials (don’t we in the hemophilia community know about THAT) being conducted in 20 hospitals across the country. Mayo is one of them. All I can say is that except for my faith, I would not have lasted this long. Now, the pain is so intense, I’m feeling despair. My toes hurt so badly, it feels as though a small, wild animal is chewing on them. My fingers are both numb and have pins and needles. Nerve pain this intense is like having an abcessed tooth throughout the body, 24/7. During these sleepless years, the nights become longer. A lot of words, but I do understand the suffering and pain of others, firsthand. When you mentioned the challenges of the liver transplant, the recent hospital ‘tune-up’, and impending hepC therapy, I was again moved by the connections. You inspire me. Blessings, Kimberly
You captured extended hospital life pretty accurately. I had a severe drug allergy that put me in the hospital for 2 weeks in Dec 2007, and I’ve stayed in countless hospitals with my grandparents the past 4 years to know they have a secret rule to make sure no one gets a night’s sleep. And I just love those big square stone thresholds going into the bathroom that make it virtually impossible to lift your 20 pound IV stand over to reach the toilet.
I’m really glad you finally gotyour transplant. Now you just need to keep taking it easy for a while so it takes and joins your happy family of other organs! Take care Bob.
PS–I’m moving to Portsmouth NH area this month for the job at Pax I took in late June, so I’ll hopefully make it to Boston much more often.
Tracey
Bob, my good friend Dan B. mentioned you had Hep C; did you know about Telaprevir, the new med in phase 3 of clinical trials? Very promising, sometimes cure, or so Duke University claims:
http://www.newsrx.com/health-articles/1509907.html
-good luck,all the best, Bear (akallmes@yahoo.com)
yes, we have been watching telaprevir carefully. But it still may be years before it is approved for people like me (transplant, coinfection with HIV – thanks for thinking of it.
Dear Bob and Anne,
You probably won’t remember me. We knew each other slightly at Princeton. At that time, I was recovering from a near-death experience that eventually led me to an ordained life. Your enthusiasm for life was inspiring to me.
Just read the PAW article about your liver transplant. I’m writing to say congratulations, thank you, and best wishes for the recovery process. Your life together helps and heals people everywhere.
Deep appreciation,
Victoria
Bobbie,
I was just reading about your remarkable battle on this website. I have not seen you since college, but have followed your fascinating career. Bravo to you for all you have accomplished, and even more for the heroic and powerful way you share this journey. I wish you well, and remember your leadership on apartheid long before many of us woke up. And everytime I picked up your father’s book on Peter The Great in St. Petersburg (all last winter), I thought of you. I look forward to reading good news about your life and service. Best to you, Steve Wilson
My dear Bob. I can still hear you playing the Virginia Reel at Congress Watch. I think of you often and wish you joy and peace in this holiday season. David and I are off to visit our son Max in Israel next week. We’ll put a prayer in the Walll for you. Much love, Rachel
Dear Bob, It was wonderful to receive your January 25th update at the six month point. Still some struggles, but oh so hopeful. To think of you again participating fully in the workforce, bringing he power of your many talents to bear is indeed a joyous thought for us all.